Terminally Ill Adults (End of Life) Bill

Kim Leadbeater Excerpts

2nd reading
Friday 29th November 2024 Commons Chamber

[Kim Leadbeater (Spen Valley) (Lab)]

I beg to move, that the Bill be now read a Second time.

Thank you, Mr Speaker, and thank you to everyone who is attending this hugely significant debate. It is a privilege to open the debate on the Terminally Ill Adults (End of Life) Bill, a piece of legislation that would give dying people, under stringent criteria, choice, autonomy and dignity at the end of their lives. I welcome the debate on this hugely important issue.

Let me say to colleagues across the House, particularly new colleagues, that I know this is not easy—it certainly has not been easy for me—but if any of us wanted an easy life, I am afraid we are in the wrong place. It is our job to address complex issues and make difficult decisions. I know that for many people this is a very difficult decision, but our job is also to address the issues that matter to people. After nearly a decade since the subject was debated on the Floor of the House, many would say that the debate is long overdue.

For my part, I have tried incredibly hard to ensure that the tone of the debate has been—and continues to be—robust, of course, but most importantly respectful and compassionate. I am pleased that, for the most part, that has been the case. I can be confident that that same tone of respect and compassion will be adopted by colleagues today, whatever views they hold. That is particularly important as we have people in the Public Gallery who have a strong personal interest in this issue. They hold a range of views. Some of them have lost loved ones in difficult and traumatic circumstances, and others are themselves terminally ill.

I want to pay a huge and heartfelt tribute to those families and to every single person who has contacted me about this issue, and in many cases shared their own very personal stories of loss and death. I know from my own personal experience of grief that telling your story over and over again takes energy, courage and strength. I am incredibly grateful to them all. It is their voices and their stories that have inspired me.

Such stories are difficult to hear, but it is vital that they are heard as they are at the heart of the debate. They show that the law is failing people. Where that is the case, we have a duty to do what is right to fix it. Those here today or watching at home are dealing with the real consequences of the failings of the current system. I will start by recounting just a few of their stories.

Warwick was married to his wife Ann for nearly 40 years. She had terminal peritoneal cancer, which meant that she could not breathe properly. She spent four days gasping and choking, remaining awake throughout despite being given the maximum dose of sedatives. She eventually died of suffocation. She had begged Warwick to end her life, but as he stood over her with a pillow he could not do what she asked as he did not want that to be her final memory of him. Ann had excellent palliative care, but it simply could not ease her suffering.

Tim fell in love at first sight when he met his wife Louise—he proposed after just three days. But Louise got cancer, twice, and at the end, the morphine simply could not control her pain. In desperation, she managed to smash a small glass bottle and tried to take her own life, not realising that her toddler daughter had got into bed with her. Tim found her. He says,

“You get to a point where you stop praying for a miracle and start praying for mercy.”

Former police officer James waved is mum off as she embarked on her final trip, to Dignitas. She had terminal vasculitis. James desperately wanted to accompany his mum and hold her hand during her final moments, but he knew, because of his job as a police officer, that it was just not possible. Indeed, she insisted that he must not go with her, so she went alone—no one to hold her hand, and no proper goodbye or funeral. Those are just a few examples of the heartbreaking reality and human suffering that far too many people experience as a result of the status quo. the public know this.

I have always been keen to ensure that my politics stays rooted in the world beyond Westminster. It is clear that public opinion is very much in favour of a change in the law. Polling shows consistently that around 75% of people would like to see the legalisation of assisted dying for terminally ill, mentally competent adults. These findings are significant, but it may not be that surprising that most people believe, as I do, that we should all have the right to make the choices and decisions we want about our own bodies. Let us be clear: we are not talking about a choice between life or death; we are talking about giving dying people a choice of how to die.

Let us examine what that choice currently looks like. I do not have a legal background but I have always been driven by a strong sense of injustice. If I see a problem, I will do everything I can to try to solve it. Indeed, in this job, we all do that every week and every day, whether here in Parliament or in our constituencies. When four former directors of public prosecutions, including the Prime Minister, two former presidents of the Supreme Court and many lawyers all agree that the law needs to change, surely we have a duty to do something about it.

Intentionally helping another person to end their life is currently illegal under the Suicide Act 1961, and carries a maximum prison sentence of 14 years. This includes family and friends helping someone who is terminally ill to die, both in the UK and overseas. Existing guidance does not stop people from being investigated by the police, adding fear, guilt and further trauma to grieving families. The law is not clear, and it does not protect individuals, families or medical professionals. That drives people to very desperate measures.

What about coercion? Senior King’s Counsel have said:

“There is currently no established system for identifying abuse or coercion in advance of a person’s death or for helping vulnerable people to make end of life decisions.”

[Kevin McKenna (Sittingbourne and Sheppey) (Lab)]

I have been a nurse for more than a quarter of a century, and in that time I have worked mostly in intensive care as a specialist. I have worked with compassionate and skilled, well-trained clinicians who have been taught to spot coercion—it is fundamental to our practice. Does my hon. Friend agree that it is wrong to suggest that clinicians cannot spot coercion in these cases?

[Kim Leadbeater]

My hon. Friend makes a very important point. I thank him for it, and for his years of service as a nurse. I have spoken to many medical professionals about this issue, and they say that this is part of their job. They are very skilled and they work closely with patients, particularly dying patients, to assess their needs and to have those difficult and delicate conversations. As the KCs said, at the moment we check for coercion in cases where people have taken their own lives—when someone is dead. The Bill would make coercion a criminal offence with a sentence of up to 14 years.

Surely, by putting a legal framework around this difficult situation, we will provide an extra level of safeguarding. One psychotherapist, who is terminally ill herself, said to me recently that coercion happens when things are hidden away. The Bill would bring things out into the open. Surely, that must be safer for everyone. Let us look at what the absence of a robust legal framework looks like.

[Simon Hoare (North Dorset) (Con)]

I thank the hon. Lady for giving the House the time to debate the Bill this morning. She references coercion, and I understand her point about the two medics, but medics will not be able to see or hear everything at all times. People will not be put beyond challenge, because subsequent to the death, if a relative claims coercion of another relative, investigation will remain. I am entirely unclear how, without peradventure, two clinicians can claim that there had been no coercion at any point.

[Kim Leadbeater]

The hon. Gentleman has made the point for me: within a robust system, we will check for coercion, but we do not have any of that now. At the moment, the person will be definitely be dead. We have to look at the status quo. Putting in layers of safeguarding and checking for coercion must be better than the system that we have now.

[Alicia Kearns (Rutland and Stamford) (Con)]

Colleagues are right to raise questions around coercion. I hosted a phone-in on LBC where people rang in and said, “I feel like I have to end my life because I recognise how difficult it is for my family to see me suffering.” The limit in the Bill, however, is that someone must have only six months to live according to two doctors and a judge, which I genuinely believe massively reduces the risk of coercion. Are we really saying that people are so desperate to bump off their families that if they were told that they had six months to live, they would escalate the process and do it sooner?

[Kim Leadbeater]

The hon. Lady makes an excellent point—she is absolutely right. The very strict criteria in the Bill add extra layers of safeguarding, which, again, we just do not have at the moment.

[Richard Burgon (Leeds East) (Ind)]

I have the deepest respect for my hon. Friend, but one thing that concerns me is societal or systemic coercion. At the moment, elderly people in our society pay thousands of pounds a month to be in a care home. What reassurances can my hon. Friend give that an elderly person in a care home who has been given six months to live would not think to themselves, “I’m a burden. I have been given six months to live. If I end my life now, I can save my family between £25,000 and £55,000”? That really concerns me.

[Kim Leadbeater]

As I have said, at the moment, we have no idea whether that person would take action because we are not having those conversations. By getting two medical professionals and a High Court judge involved, we would be putting this out in the open. Evidence from other jurisdictions shows clearly that coercion tends to happen the other way; what tends to happen is that families try to prevent the person from making the choice of an assisted death.

[Several hon. Members rose—]

[Kim Leadbeater]

I will take one more intervention.

[Wera Hobhouse (Bath) (LD)]

Is it not the case that the conversations that patients will have with doctors will bring out whether they have been coerced or are suffering intolerably? The criteria are about suffering, not whether somebody worries that they are a burden.

[Kim Leadbeater]

I agree absolutely. Those conversations, which are not taking place at the moment, are very important. I will make some progress.

There has rightly been a lot of discussion about palliative care in recent weeks, and I am convinced that a significant amount of that discussion would not have taken place without the introduction of the Bill. It is a long overdue conversation, and I am very pleased to see it happening.

I have met with the Association for Palliative Medicine, Hospice UK, Sue Ryder and Marie Curie, and last week I was delighted to attend the inaugural meeting of the all-party parliamentary group for hospices. I also attended the fantastic Kirkwood hospice, which serves my constituency of Spen Valley. I pay tribute to the dedicated staff and volunteers across the country in the palliative care sector, who do some of the most vital work in society. We must do more to support them, and I look forward to working with the Government and colleagues across the House in that important endeavour. That is why I have included in the Bill a requirement for the Secretary of State to report to the House on the availability, quality and distribution of palliative care.

Of course, assisted dying is not a substitute for palliative care—it is not an either/or. We have some of the best palliative care in the world in this country, and, when it can meet the needs of terminally ill people, it is second to none. However, when it cannot, surely the choice of an assisted death should be one component of a holistic approach to end of life care.

The comprehensive report by the Health and Social Care Committee, published earlier this year, found no indications of palliative care deteriorating in quality or provision in places where assisted dying had been introduced.

[Jim Shannon (Strangford) (DUP)]

Ever mindful of what the hon. Lady has said about the criteria, I remind her that Belgium started off with a simple project like the one she refers to but it deteriorated and expanded to include sufferers of dementia and under-18s—children. What guarantees do we have that this legislation will not end up with a situation like that in Belgium, in which case anything goes? Is that what the hon. Lady wants? I do not want that. Does she?

[Kim Leadbeater]

I thank the hon. Member for his intervention, but let us be very, very clear. Huge amounts of research has been done by the Health and Social Care Committee, and indeed by myself and others. The model being proposed here is nothing like what happens in Belgium. It is nothing like what happens in Canada. There are strict, stringent criteria, and if the House chooses to pass the Bill, those criteria cannot be changed.

[Mark Pritchard (The Wrekin) (Con)]

I am grateful to the hon. Lady for giving way and congratulate her on the measured way in which she has conducted this debate over the last few weeks. Whatever side of the House and whatever side of the debate, I would like to recognise that—it is not always the case. But is it not the case that the Bill crosses a new and irreversible medical red line for doctors and nurses? Is it not the case that in other Bills we have seen in this House over the years, the safeguards invariably become obsolete over time, and so the safeguards in this Bill, however well meant, should be seen as temporary safeguards and not immutable safeguards?

--- Later in debate ---

[Kim Leadbeater]

Absolutely not. I respectfully disagree with the right hon. Gentleman. In countries where a Bill of this nature has been implemented, the safeguards have been in place and the boundaries have never changed. I will come on to talk about that.

[Sir Oliver Dowden (Hertsmere) (Con)]

rose—

[Kim Leadbeater]

I will take one more intervention and then I must make some progress.

[Sir Oliver Dowden]

I thank the hon. Lady for giving way. I have a great deal of sympathy for the arguments she is making. However, we have seen, time and again, excessive judicial activism taking the words in this House and expanding their meaning into places we had not foreseen. What reassurances can she give that the words in her Bill will be respected by the judiciary and that we will not find ourselves in a decade’s time in a totally different place that this House did not intend?

[Kim Leadbeater]

I thank the right hon. Gentleman for his intervention. The courts have repeatedly put this issue back to Parliament. This is not their domain. This is the legislation. There are strict criteria.

Coming back to palliative care, in situations where pain simply cannot be managed, the result is deaths that are so horrific that the person themselves can spend hours, and in some cases days, in unimaginable pain as they die. I want to bring the debate back to the issue that we are trying to solve. For their loved ones, no matter how many joyful and happy memories they have, they also have the trauma that comes from watching someone you love die in unbearable agony and fear. That memory stays with them forever.

Rebecca’s mum Fiona developed metastatic brain cancer at the age of 69. She had very good palliative care, but her pain could not be managed, and she died begging and screaming for assistance to end her suffering. Her family and the medical team treating her cried beside her bedside as it took her 10 days to die.

Lucy’s husband Tom was 47, a music teacher with a young son. He had bile duct cancer which obstructed his bowel, resulting in an agonising death. Tom vomited faecal matter for five hours before he ultimately inhaled the faeces and died. He was vomiting so violently that he could not be sedated and was conscious throughout. Lucy pleaded with the doctors to help. The doctor treating him said there was nothing he could do. His family say that the look of horror on his face as he died will never leave them. Lucy now has post-traumatic stress disorder, which is quite common for families who lose loved ones in such harrowing circumstances.

[Rachel Taylor (North Warwickshire and Bedworth) (Lab)]

I thank my hon. Friend for the powerful and moving stories she is telling. A constituent of mine watched her mum suffer from pancreatic cancer. Unable to keep any food down, she basically starved to death. Does my hon. Friend agree that that is no way to see a loved one die? Does she also agree that we did not come into this place to shy away from difficult choices, but to listen to our constituents and make better laws for everyone?

[Kim Leadbeater]

I thank my hon. Friend for her intervention, and I am so sorry to hear that story from her constituency. We all have stories from all our constituencies, and she is absolutely right that we are here to make difficult decisions. On her example there, I have been astonished by the number of people who have been in touch with me to tell me about the terminally ill loved ones who have starved themselves to death out of desperation—something that takes far longer than we may imagine and is just horrific for everyone involved. That is currently legal, and doctors are required to assist the patient through this agonising process. How can we allow that, but not a compassionate and humane assisted death?

[Blair McDougall (East Renfrewshire) (Lab)]

I join the right hon. Member for The Wrekin (Mark Pritchard) in commending my hon. Friend for the way she has made sure that this binary debate has not been a polarising one. I started the debate where she is now, but I have moved to opposing the Bill by the stories I have heard of disabled people who have had “do not resuscitate” put on their medical records without their permission, or who have been stopped by strangers in the street and been told, “You would be better off dead.” I know she will say that we are voting on the specifics of her Bill, but we are also voting on a principle. Does she agree that there should be a precautionary approach, and does she honestly believe the legislative process gives us the time to be sure that we are making the right decision?

[Kim Leadbeater]

I thank my hon. Friend for his intervention and I will come on to some of those points later in my speech. Let us be very clear: the title of the Bill refers to terminally ill adults, not disabled people or elderly people, as another hon. Member referred to. The criteria are very clear.

I come back to the status quo, which is the problem we are trying to address. If people want to avoid the trauma of some of the harrowing circumstances I have described, they can have an assisted death—just not in this country. If they have £10,000 or £15,000, they can make the trip to Switzerland or elsewhere but, because of the current legal position, it is often a deeply distressing and very lonely experience, shrouded in secrecy, with people feeling like criminals as the fear of prosecution hangs over them.

Ilana’s husband Crispin had late-stage motor neurone disease. He was paralysed, and Ilana is a wheelchair user, but at his request she took him on a traumatic and difficult journey to Switzerland. She describes the intense stress and anxiety she felt due to the total secrecy of their plan—and we can only imagine what the journey home was like, on her own, with an empty seat beside her.

There are also those terminally ill people who take matters into their own hands. Gareth’s father Norman served in the Welsh Guards. He was a strong man, but his final five years were full of pain and discomfort. He had prostate cancer, which he lived with for 15 years. He was given good initial hormone therapy and chemo, but the cancer spread everywhere and the pain could not be eased. One day, when it all became too much, he went into his garden with the gun he owned and shot himself. Gareth’s sister rushed to his house and found him. Gareth said his father just wanted the pain to stop.

Then there is Peter, from Mirfield in my own constituency, who stopped me in a car park a couple of weeks ago to tell me the harrowing story of his beloved wife, who was diagnosed with metastatic cancer aged 52. The treatment was ineffective and her symptoms were unbearable. She took an overdose of her medication, and Peter found her and took her to hospital. She recovered and he brought her home, but the following day she made another attempt to take her own life, in a way that is too awful to describe. Peter found her dead, and he spent the next eight hours being questioned by the police.

It is estimated that more than 600 terminally ill people take their own lives every year. Often patients will store up medication. Josh, a 33-year-old from Huddersfield went to coach his local kids’ rugby team one Saturday and came back to tell his mum all about it. He found her dead. Lisa, who was terminally ill, had stored up her medication and taken her own life.

Our former colleague Paul Blomfield, the previous MP for Sheffield Central, has campaigned tirelessly on this issue since his dad Harry took his own life in 2014, alone in his garage, after being diagnosed with inoperable lung cancer. Language matters: Harry was not suicidal; he loved life, but he had watched too many of his friends have lingering, degrading deaths and he did not want that for himself. But, like the others, he could not tell Paul and his family of his plan, as they would have been complicit and could have faced prosecution. How many precious days and weeks did Harry miss out on as a result of having to take action while he was still physically able to do so? Hearing these stories is not easy, but it is important.

[Lloyd Hatton (South Dorset) (Lab)]

What I have been struck by in recent weeks as I have listened to Members from across the House is the clear agreement that the current situation is neither sustainable nor dignified. Almost everyone in this House agrees that the status quo is unacceptable in terms of dignity, palliative care and end of life. Given that, does my hon. Friend agree that today’s debate is about how we depart from the unacceptable situation that we currently face? Is today’s vote not the first stage of an important discussion about we improve the end of life for hundreds and hundreds of people across this country?

[Kim Leadbeater]

I wholeheartedly agree. I am setting out what we are dealing with now. This cannot be right, and surely we have a duty to do something about it.

[Wendy Morton (Aldridge-Brownhills) (Con)]

Will the hon. Lady give way?

[Kim Leadbeater]

I am going to make some progress, if that is okay.

Some of the most important voices in this debate are, of course, those of people currently living with a terminal illness. Having a terminal diagnosis is perhaps one of those situations where it is very hard, if not impossible, to know how we would feel. I have met many terminally ill people over recent weeks and every one of them is in my thoughts today.

Sophie, who is here today, was diagnosed with stage 4 secondary breast cancer, which has spread to her lungs, liver and pelvis. She is allergic to opioids, so she knows that her pain is very unlikely to be able to be managed. She has a 17-year-old daughter. All she asks is to have the choice to say goodbye to her daughter at a time of her choosing, in circumstances that she can have some control over, and for her daughter to be able to remember her as the vibrant, positive woman she is.

Nathaniel, who also joins us today, has stage 4 incurable bowel cancer, which is now in his liver and brain. Like many of us, Nat says that he does not know whether he would choose an assisted death or not, but he simply cannot understand why anyone would want to deny him the choice. He says:

“I wish to live as fully as I can and for as long as possible. But when the time comes”,

Nat also wants

“the right to die with dignity and compassion”.

Another very emotional lady came up to me at a recent interfaith event. She and her husband thanked me for putting the Bill forward. She said, “Kim, I am a proud Christian and I am guided by my faith. But I also have terminal cancer and I want the right to choose a compassionate death.”

There has been much discussion about the views of people who hold religious beliefs. I fully respect those beliefs and do not intend to say much more about this, other than that I know there are a range of views within faith communities. Indeed, some of the most powerful conversations that I have had have been with people of faith, including in my own constituency. People of different religions have said that although they would not choose an assisted death for themselves or their family, who are they to stop someone else who may want to make that choice?

[Barry Gardiner (Brent West) (Lab)]

Will my hon. Friend give way?

[Kim Leadbeater]

I will make some progress, if I may. I hope that I have set out the problem that clearly exists. Now allow me to set out how the Bill can address that problem and, most importantly, do so safely and effectively.

If the Bill were to become law, it would contain the most robust and strongest set of safeguards and protections in the world. Very strict eligibility criteria and multiple layers of checks and safeguards are embedded in the Bill, none of which, as we have seen, exist at the moment. I made a conscious decision to name it the Terminally Ill Adults (End of Life) Bill, rather than anything else. That title can never be changed and ensures that only adults who were dying would ever come within its scope. As such, the Bill is not about people choosing between life and death; it is about giving dying people with six months or less to live autonomy about how they die and the choice to shorten their deaths.

The Bill does not apply to people with mental health conditions. It does not apply to the elderly. It does not apply to people with chronic health conditions, and it does not apply to disabled people, unless, of course, they have a terminal illness, in which case they would and should be entitled to the same rights as anyone else.

[Daisy Cooper (St Albans) (LD)]

One group of people who are not often talked about are the learning disabled. Clause 9(3)(b) says that if an assessing doctor has any doubt as to the capacity of the person, they may refer them for a further psychiatric assessment. If the Bill is voted through today, will the hon. Member engage in a debate about whether that language should be strengthened from “may” to “must” and whether the training and experience required of the assessor should be strengthened as well?

[Kim Leadbeater]

The hon. Lady makes an excellent point and highlights a community who we must consider in light of the Bill. I would absolutely be open to that conversation in Committee; it is a very valid point.

There are different views within the disabled community. As Professor of Disability Research, Sir Tom Shakespeare says that it is unacceptable that people with disabilities continue to face social stigma and inequalities, but that it would be a mistake to conclude that we should oppose legalising assisted dying for terminally ill people until those wider problems are fixed. He says that it is paternalistic and wrong to imply that inequalities will be resolved by reducing choices, and that a clear, transparent legal framework for end-of-life choice is better for everyone. He is right. There is, of course, still work to do in the fight for equality for people with disabilities, but once again it is not an either/or. I will campaign alongside many others in this place for those rights, but I will also campaign for the rights of terminally ill people, because their rights are as important as anybody else’s rights.

[Barry Gardiner]

I have huge respect for the hon. Lady for the way that she has conducted this debate over the last few weeks. My concern is that she has focused today on the individual and the individual choice, but we are here to legislate for society as a whole. In legislating, what we are saying if we pass the Bill is that it is okay to take that choice—[Interruption]—and there will be some people who have six months of their life to go who will then feel, “Ought I to do this? Is this something that I now should do?” That brings into play a whole set of considerations—“Is it better for my family? Is it financially better for my family?”—in ways that, at the moment, are out of scope. Rather than simply focusing on the individual suffering, which we all recognise is acute, we must broaden the debate to the impact that the legislation will have on society as a whole.

[Kim Leadbeater]

I thank my hon. Friend for his intervention. I suggest that the Bill will give society a much better approach towards end of life. We are already hearing conversations about dying and death which I do not think we have heard enough in this country. We have to take a holistic view. Indeed, that is what happens in other countries and other jurisdictions. Having those deep and meaningful conversations about death and dying is really important. My hon. Friend’s comments bring me on nicely to the protections and safeguards in the Bill.

[Mr Toby Perkins (Chesterfield) (Lab)]

A decade ago, I voted against a similar Bill, because I felt that perhaps it was not perfect and there were more things that I needed to know. My hon. Friend is right that we have not talked about death for the 10 years since or considered any legislation. The truth is that if we vote against her Bill today, it will be the end of the conversation once again for another decade.

--- Later in debate ---

[Kim Leadbeater]

My hon. Friend is absolutely right. How many people will go through the situations I have described if it is another 10 years before we address this matter?

[Several hon. Members rose—]

[Kim Leadbeater]

I am not going to take any more interventions, I am afraid, because I am conscious that lots of hon. Members want to speak; I know Mr Speaker is conscious of that as well.

Under the Bill, any terminally ill person who wants to be considered for an assisted death would have to undertake a thorough and robust process involving two doctors and a High Court judge. No other jurisdiction in the world has those layers of safeguarding. The person requesting assistance must have mental capacity and a settled wish at every stage. That means they must repeatedly demonstrate that they understand the information relevant to their decision, the ability to retain that information, and to use or weigh that information as part of the process of making the decision. We know that capacity can fluctuate which is why it is assessed at every step of the process.

[Melanie Ward (Cowdenbeath and Kirkcaldy) (Lab)]

On that point, will my hon. Friend give way?

[Kim Leadbeater]

I am sorry but I am not going to take any interventions, as I need to make progress.

The court must speak to one of the doctors and can hear from anybody else they deem necessary. If there is any evidence of coercion, the court will not approve the request, and if evidence emerges subsequently, the court order could be revoked. It is also important to note that the person can change their mind at any time, with periods of reflection built in. Having consulted at the highest levels in the judiciary and the medical profession, I know that they can and will fulfil those safeguarding responsibilities and that they have the expertise to do so.

Let us be clear: as my hon. Friend the Member for Sittingbourne and Sheppey (Kevin McKenna) said earlier, this is not brand new territory for doctors. Doctors, working in partnership with other clinicians, are already required to manage complexity in end-of-life decision making. I followed the request of the British Medical Association that doctors should be under no obligation whatsoever to participate, but if they do participate, they will receive appropriate training and support. Doctors should be able to use their professional judgment when and if a conversation takes place, taking their cue from the patient, as they do for many other issues. I welcome that patient-centred approach. Many doctors feel the change in the law would safeguard clinicians and patients by making everything explicit.

When it comes to the detail of what assisted dying would look like, we have the benefit of drawing on the experience of 31 jurisdictions around the world. I could talk extensively about the international experience of assisted dying. The Health and Social Care Committee report did a brilliant job of that, and this Bill has looked at best practice as well as models which I and many others would not be comfortable with our having here in England and Wales.

Reflecting on their experience, clinicians in Australia say:

“through deep and meaningful conversations between doctors, patients and their loved ones we can dispel fear, reduce suffering, bring death and dying out of the shadows, and so allow patients and their families a better quality of life and quality of death”.

As one Australian Member of Parliament said:

“We have brought ‘behind-closed-doors’ practices into the open and given dying people meaningful, transparent choices. Crucially none of the fears that were put forward as reasons not to change the law have been realised. The status quo was broken and assisted dying works.”

Evidence from around the world shows that the option of having an assisted death actually lifts the fear that terminally ill people have, and that many never actually use it but are able to make the best of the time they have left due to the comfort and reassurance that it provides.

People talk about a slippery slope, but the Health and Social Care Committee found that not one jurisdiction that has passed laws on the basis of terminal illness has expanded its scope. [Interruption.] That is absolutely true. As the courts here and in Europe have repeatedly made clear, Parliament is sovereign. This Bill could not be made any broader through any judicial process.

Speaking of process, with reference to the Bill, having listened to what I know are genuine concerns of Members about ensuring that we get this legislation right, I commit to the House that if the Bill passes Second Reading today, which I sincerely hope it does, I am minded to move a motion that gives the Bill Committee the power to take oral and written evidence in order to ensure that a thorough approach continues to be taken. That is not normal procedure for a private Member’s Bill, but I think that that is the right thing to do. I also reassure colleagues that the Bill Committee will meet over a number of weeks, meaning that there is ample time for full consideration of the details of the Bill, including amendments. The Committee will be representative of the views and make-up of the House. Let me be clear: that will mean there will be representatives of different parties with a range of views on the Committee.

As the Leader of the House said at the Dispatch Box just yesterday, and has said several times, the Government will, of course, work with me to ensure that the Bill is workable and operable. That will quite rightly take time, and I have included in the Bill a commencement period of up to two years—this is not going to happen overnight. That timeframe can be explored in Committee, as it is more important to get this right than to do it quickly.

In conclusion, for the reasons I have set out, I am very clear that the law needs to change to give terminally ill people choice at the end of life and to protect their loved ones from fear of prosecution. There will be some of us here today who are lucky enough not to have personal experience of this issue, but sadly we know that any one of us could end up in this heartbreaking situation. We are all living longer, which is brilliant, and I have campaigned inside and outside Parliament for a greater focus on prevention and early intervention of illness and disease to keep us fit and healthy for as long as possible, but any one of us or our loved ones could be unfortunate or unlucky enough to receive a terminal diagnosis. I struggle to see how it is fair or just to deny anyone the autonomy, dignity and personal choice of taking control of their final weeks. And the right to choose does not take away the right not to choose. Giving the choice of an assisted death to those who want it would of course not stop anyone who is terminally ill from choosing not to make that choice.

Whatever happens today, I am incredibly proud of the work that my fantastic team and the many campaigners have done on this hugely significant, emotional and sensitive subject. We need to be clear: a vote to take this Bill forward today is not a vote to implement the law tomorrow. It is a vote to continue the debate. It is a vote to subject the Bill to line-by-line scrutiny in Committee, on Report and on Third Reading. Then, of course, the Bill will go to the Lords for what I have no doubt will be further robust debate and scrutiny. This will be a thorough process, focused on one of the most significant issues of our time—an issue that people across the country clearly want us to address, none more so than the many families who are facing the brutal and cruel reality of the status quo. Today is the beginning, not the end, of that process, but the debate can continue only if colleagues join me in the Aye lobby today. I wholeheartedly encourage them to do so, and I commend the Bill to the House.

--- Later in debate ---

[Several hon. Members rose—]

[Kim Leadbeater]

On a point of order, Mr Speaker. I seek your guidance on correcting the record. I said in my speech that I have consulted with the highest levels of the judiciary and the medical profession. I have received correspondence from the Judicial Office and wish to clarify my earlier comments. Although I have spoken to lawyers and judges, I should not have implied that the serving judiciary have in some way indicated their agreement with the Bill; they have not. The serving judiciary have been very clear that they have made no public comments about the Bill one way or the other. I apologise if I implied anything to the contrary.

[Mr Speaker]

I thank the hon. Lady for correcting the record.

Terminally Ill Adults (End of Life) Bill (First sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[The Chair]

Good afternoon. In the Committee that I was in this morning, someone asked if they could remove their jacket, which seemed unbelievably spartan, but if any Member wishes to do so, they may. We are now sitting in public, so the proceedings at the present are being broadcast. Before we start, I have a couple of preliminary remarks. Please will you all turn off your mobile phones and other noisy electronic devices. I am also asked to remind you that tea and coffee are not allowed during sittings; if you want them, you will have to go outside.

We shall first consider the motion on the amendment paper tabled by the Member in charge of the Bill, Kim Leadbeater, which is to sit in private to consider matters relating to the sittings motion.

[Kim Leadbeater (Spen Valley) (Lab)]

I beg to move,

That the Committee do sit in private to consider matters relating to the sittings motion.

It is a pleasure to serve under your chairmanship, Sir Roger, and to be here for the first formal meeting of the Terminally Ill Adults (End of Life) Bill Committee. Ahead of the oral evidence sessions next week and the line-by-line scrutiny thereafter, we have two jobs to do this afternoon. One is to confirm the sitting times for the Committee and the other is to confirm the witnesses for oral evidence. Following discussions, I have taken the decision to have some of our sitting today in private. That is normal procedure for discussing witnesses and I think it is the right way to proceed, given that some of those discussions will probably involve conversations about the suitability of witnesses who are not here to speak for themselves. It would be inappropriate to discuss named individuals in such a way. Transparency is of course very important, but so is respecting individuals’ privacy. I hope that is clear to colleagues and to others.

I appreciate that members of the Committee and those viewing our proceedings may wish to know about the purpose and effect of this motion. Most Public Bill Committees are subject to programming, and the Programming Sub-Committee would discuss in private which witnesses to hear from. Similarly, Select Committees discuss in private which witnesses they will hear evidence from. Out of respect for the named individuals that we may call to hear evidence from, I propose that we discuss them informally in private. Once that informal discussion has concluded, the Committee will move back into a public session to formally consider the sittings motion. Any Member who wished to speak about the motion publicly or move an amendment would then be able to do so.

[Danny Kruger (East Wiltshire) (Con)]

It is a pleasure to serve under your chairmanship, Sir Roger. I look forward very much to the process of this Committee and to working with hon. Members to do what we can to ensure that a good Bill is presented back to the House.

I very much respect the points made by the hon. Member for Spen Valley. Nevertheless, I do have some real objections to the motion, which I encourage Members to oppose. The fact is that this debate was due to be held in public—in fact, people have travelled here in the expectation that they would be able to attend and observe our debate on the sittings motion—but last night, for reasons we do not fully understand, a decision was clearly made to table a motion that we sit in private. I would be grateful to understand why that decision was made so late.

My general point is that there is a clear public interest case. The public should understand why witnesses have been chosen and why other people have not, and if there are concerns about the witnesses, they should be aired publicly. This is the only time that the public are being consulted—that experts from outside Parliament have a chance to contribute to our deliberations. I fail to understand why those discussions cannot be held in public. The only argument that I can imagine—and the hon. Member for Spen Valley made it—is that Members might for some reason be uncivil or speak disrespectfully about potential witnesses, which I do not for a moment believe. I am sure that you, Sir Roger, or the other Chairs will keep us in order throughout our proceedings.

We are here to talk about the overall balance and particular qualifications of the witness list. Looking at the witness list that was presented this morning by the hon. Lady, I have very serious concerns, which should be aired publicly, about the list. It includes eight witnesses from foreign jurisdictions, who are being called to give evidence from abroad; all are supporters of assisted dying in their jurisdictions. There are no people speaking against the operations of assisted dying laws internationally. There are nine lawyers on the list—all of them, with the exception of three who appear to be neutral, in favour of a change in the law. There is not a single lawyer against this Bill. Sir James Munby was suggested, but I understand he has been removed. There might be a perfectly good reason for that, but he has spoken against the Bill.

There is nobody on the list from deaf or disabled people’s organisations, but the UN convention on the rights of persons with disabilities recognises the importance of engaging with such organisations in laws of this nature. With the exception of Dr Jamilla Hussain, there is no one on the witness list who can speak to the equality impacts of assisted dying.

--- Later in debate ---

[Danny Kruger]

I look forward to the opportunity to discuss the sittings motion, which I hope we can do publicly. On a general point about process, the Bill was written by a campaign group.

[Kim Leadbeater]

That is not true.

[Danny Kruger]

Well, it had a significant input.

[Kim Leadbeater]

On a point of order, Sir Roger. That is categorically not true. The Bill was written with senior legislative expertise, along with myself as a sitting Member of Parliament and with esteemed colleagues. I take that point of offence quite personally.

[Danny Kruger]

Well, I hope that the hon. Member—

[Danny Kruger]

I apologise, Sir Roger, and I apologise to the hon. Lady for causing offence. I hope she will not be offended when points are made that she disagrees with.

[Kim Leadbeater]

It is a matter of fact.

[Danny Kruger]

I am happy to withdraw the suggestion that the Bill was written by a campaign group, on the basis of the hon. Lady’s assurance that it was written by herself. I hope it is not the case that there was significant input from campaigners. I do not see why there should not have been; I just mention it because the Bill came to us with no formal consultation. There was no impact assessment—

[Kim Leadbeater]

On a point of order, Sir Roger. Surely we are having a conversation about whether we sit in private or not. Can we keep to that matter?

[The Chair]

Forgive me: I am in the Chair and I will decide—but the hon. Lady is absolutely correct. Once again, I am afraid that the hon. Member for East Wiltshire is straying very wide of the motion on the amendment paper. I would be grateful if he would now come to his conclusion so we can start to move forward.

[Danny Kruger]

I absolutely will. In fact, I will finish there. The points I have been trying to make are simply in the light of the fact that if the hon. Lady’s motion is accepted, the public will no longer have the opportunity to hear any of our points on the sittings motion—on the process that we will be decide on.

[Kim Leadbeater]

On a point of order, Sir Roger. That, again, is factually incorrect. We have already said that there will be a private sitting for conversations about individual witnesses, including some that the hon. Gentleman has already started talking about, and then we will open again to the public so that everybody can hear the Committee’s conversations.

--- Later in debate ---

[Kim Leadbeater]

I beg to move,

That—

(1) the Committee shall (in addition to its first meeting at 2.00 pm on Tuesday 21 January) meet—

(a) at 9.25 am and 2.00 pm on Tuesday 28 January;

(b) at 9.25 am and 2.00 pm on Wednesday 29 January;

(c) at 11.30 am and 1.00 pm on Thursday 30 January.

(2) during further proceedings on the Terminally Ill Adults (End of Life) Bill, the Committee do meet on Tuesdays and Wednesdays while the House is sitting at 9.25 am and 2.00 pm.

(3) the Committee shall hear oral evidence in accordance with the following Table:

[Naz Shah]

I beg to move manuscript amendment (b), after “General Medical Council”, insert “, Royal College of Psychiatrists”.

--- Later in debate ---

[Naz Shah]

Thank you, Sir Roger.

By adding Karon Monaghan KC, an eminent equality and human rights law barrister, amendment (e) would add balance among the lawyers in the Committee. I would also like to add James Munby, or someone from His Majesty’s Courts and Tribunals Service, because we need someone who can speak to court capacity issues in relation to the Bill. Professor Katherine Sleeman is a great expert on all these matters.

I am going through the list, and I am unclear what the Australian MP would add. If we remove the other two, there are other pro-AD Australian experts who will speak instead. If we replace those three, who are experts from—

[Kim Leadbeater]

On a point of order, Sir Roger. My hon. Friend has just mentioned two names that are not in her amendment, and I find that slightly confusing.

[Naz Shah]

These are replacements of the words in your paper.

--- Later in debate ---

[Danny Kruger]

All the names that the hon. Member for Bradford West has suggested were indeed submitted, I believe, to the hon. Member for Spen Valley ahead of the deadline that she put to us at the end of last month.

[Kim Leadbeater]

On a point of order, Sir Roger. All those names were not submitted.

[Danny Kruger]

The hon. Lady can feel free to intervene on me without troubling the Chair. I stand corrected if that is the case. We only received the final list this morning. It was necessary to make alternative suggestions ahead of that, which was done. I am now supporting the hon. Member for Bradford West in making suggestions for slight adjustments, as she suggests is all that is appropriate at this point. The list is unbalanced. I had to do a very quick analysis, and of the almost 60 names that have been put to us, 38 of them are in favour of the Bill and the principle of assisted dying, whereas there are only 20 who are opposed. There is an inherent imbalance there. It is only a quick analysis that has been done, and we will be able to do more of that subsequent to this sitting, but that is my impression.

--- Later in debate ---

[The Chair]

I now call the promoter of the Bill. I will then call the mover of the amendment.

[Kim Leadbeater]

I thank colleagues for their time this afternoon. It has been an extremely productive session. I am very proud of the tone of the debate: I think we have done a very good job, as we did on Second Reading, of showing this place in a good light.

I reiterate that there are a range of views in this Bill Committee, in the same way that there are a range of views across the House on this significant and deeply emotive issue. There are a range of views among the witnesses we will hear from, and I spent a huge amount of time ensuring that. Colleagues have given me more than 100 names of people they might like to hear from. I had my own list of people I would like to hear from, and many of them are not on the list of those who will give oral evidence.

I have tried to be extremely balanced, so we will hear from people with a range of views and opinions, but most importantly we will hear from people with expertise. That is the purpose of the Committee: to hear from people who can advise us on the detail of the Bill. We will go through this Bill line by line, and we need to hear from people who can help us to do that. We have some fantastic expertise on the Committee, but for many of us there are areas that we need to learn more about. It is important that the witnesses give us the information to enable us to do that, rather than—as numerous colleagues have said—once again going over the fundamental principles around assisted dying, because we did an excellent job of that on Second Reading.

At the end of our endeavours, we will produce a piece of legislation that will be re-presented to the House, and colleagues will again have the opportunity to vote on it however they see fit. There may be people in this room who vote differently from how they voted on Second Reading; there may be colleagues out there who do likewise, one way or the other.

I am very clear about this Committee’s role, which is to work on the Bill together, collegiately and collaboratively, irrespective of our different views, and re-present it to the House so that the House can continue to do its job. It is not just the Commons; the Lords will also have the opportunity to scrutinise the Bill and table amendments. I have always been open about the fact that this is about us working together. Where the Bill needs to be amended to make it more robust and alleviate people’s concerns, whether that is around coercion or capacity, that is now the Committee’s job. I stand ready to serve and to do that.

We have spent a lot of time this afternoon on this, and quite rightly so. As far as I am concerned, we are now in a position to move forward. I am very happy that we will hear from so many witnesses over several days, and I am happy that I have added more time to that so that we can hear from more witnesses, which I think is important. As colleagues have said, our job now is to get on with this really important piece of work.

[Naz Shah]

I thank my hon. Friend the Member for Spen Valley, the promoter of this Bill, because she has been very helpful. She has certainly added one of my key witnesses to her list, and I am grateful for that.

I want to respond to some of the points that have been made. One of the biggest issues for me is amendment (b), which would insert “Royal College of Psychiatrists”. My hon. Friend the Member for Ashford made the point that all psychiatrists come under the GMC, but not every member of the GMC is a psychiatrist. That speaks to the issue of coercion, mental health and capacity. That is the expertise that I am looking for in the line-by-line scrutiny of the Bill, and I would really like to hear from the Royal College of Psychiatrists.

I am happy to be guided by you, Sir Roger, because I am new to this process and I have not done a Bill of this nature before, but my only worry with the outside evidence and briefings is that they will not be on the record when we are looking at Hansard and seeing whether they have been taken into account. I would be happy to receive some assurance about that. Yes, we can organise lots of briefings and lots of experts, but does that not defeat the object of having this debate so robustly in the first instance?

The hon. Member for Harrogate and Knaresborough raised the issue of language, and the point about added value. I think that language is correct, because I do want to add value to this debate. I want value added, because it is important for my constituents that when I vote on the Bill on Report, I do so knowing that I have listened to all sides of the debate.

My hon. Friend the Member for Stroud asked whether this is a for-and-against argument. In particular, he said that we do not need to hear from those who are opposed, because we want to strengthen the Bill so that it can go through the House. Although I appreciate the sentiment, I put it to everyone that it is not about getting the Bill through; it is about getting the right information so we can scrutinise whether it is fit to go through the House. For that reason, it is important to hear from those who are opposed. It is naive to think that we only need to hear from people who are in support.

Terminally Ill Adults (End of Life) Bill (Money)

Kim Leadbeater Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Kim Leadbeater (Spen Valley) (Lab)]

On 29 November last year, in a debate widely described as showing Parliament at its best, this House sent the Terminally Ill Adults (End of Life) Bill into Committee for scrutiny by a majority of 55. It was the clear will of this place that the Bill should be allowed to proceed, in the knowledge that Members will have further opportunities on Report and beyond to decide whether it should be enacted. For that process to continue, the resolution before us today must pass.

Those who oppose the Bill on principle—something they are absolutely entitled to do—are seeking to suggest that there is something extraordinary or improper about this process, and on that they are simply wrong. This is a standard procedure that comes before this House all the time. Without it, there can be no Bill—that, I humbly suggest, is sadly what some people intend. This is not a blank cheque, as some Members have suggested. The right time to discuss the detail of what expenditure may be required is when we know the final shape of the Bill. At that point, if Members are concerned about the expenditure required, or indeed anything else, they can of course vote as they wish.

[Sir John Hayes (South Holland and The Deepings) (Con)]

The hon. Lady says that the right time to discuss the capacity of the judiciary and health service to deliver the Bill is presumably once it has completed its Committee stage, but should the Committee that considers the Bill have the impact assessment that allows it to scrutinise it line by line, mindful of the implications that it might have on our health service and our judiciary?

--- Later in debate ---

[Kim Leadbeater]

I respect the right hon. Gentleman’s question, but I would say that point is slightly out of the scope of the money resolution. However, I think it is a fair point, and I acknowledge that a lot of work is being done, as the Government said it would be, to look at the workability and operability of the Bill. I am working closely with Departments on those issues, and those conversations will continue, alongside the work of the Committee. I hope that provides him with some reassurance.

The other point is that I have never sought to stifle debate on the Bill or this really important issue; quite the contrary. I value it and I welcome it, but I do ask that it continues to be conducted in the same respectful and considered manner as on Second Reading. Where we disagree, let us do so with respect and without questioning each other’s motives or integrity.

[Ruth Cadbury (Brentford and Isleworth) (Lab)]

I congratulate my hon. Friend on how she has conducted this important debate. On stifling debate, does she share my hope that there will be no vote against the money resolution, because such a vote would end debate? While there was a strong vote in support of the Bill, there were many strong arguments for amendment and there was opposition. Does she agree that that debate needs to happen as the Bill proceeds and not be stifled and ended today?

[Kim Leadbeater]

I absolutely agree with my hon. Friend. Having done such a powerful job of debating this issue on Second Reading, it is crucial that we continue that debate in the right manner, as Parliament voted to do. It would be wrong for anything that happens today to put a stop to that debate and those discussions.

Let us not forget that the public are watching our deliberations carefully and that the issue we are discussing means a huge amount to many people. It is extremely serious and, for many, hugely emotive. We owe it to our constituents to treat it with the seriousness it deserves. I ask Members to consider carefully what it would say about us as a Parliament if such an important debate were to be curtailed as a result of procedural manoeuvring, which, sadly, is what I worry is being attempted by some colleagues today.

The money resolution is not about the pros and cons or the detail of the Bill; it will simply allow for proper scrutiny—including of any cost involved—to continue, and mean that the Bill Committee can begin its important work. I urge Members to support the resolution.

[Several hon. Members rose—]

--- Later in debate ---

[Brian Mathew]

There would be added expense. Social workers are trained in understanding family dynamics, and need desperately to be involved in these situations.

[Kim Leadbeater]

I take that point on board. I had a very productive meeting with the Association of Palliative Care Social Workers yesterday, and we had a useful conversation on that issue.

[Brian Mathew]

I thank the hon. Lady.

Terminally Ill Adults (End of Life) Bill (Second sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sarah Olney]

Q Can you talk a little bit more about whether you perceive any difficulties in having a definition of terminal illness in the Act? How do you think the medical profession will interpret that?

Professor Whitty: At the extremes —most people are at the extremes—it is very clear what is going to happen. For most people, you can say with confidence, barring some extraordinary accident like being hit by a car on the way out, “You’ll be fine in a year, even though you have heart disease, cancer or whatever.” At the other extreme, there are people who are clearly dying and will die in the next two or three days, and virtually nothing will change that reality.

What we are talking about in the Bill, of course, is a point between those stages, but people will definitely reach a point where there will be an inexorable and, importantly for the Bill, unreversible slide towards a point of death. People can make a reasonable central view, if they are experienced in a particular disease, about when the death is likely to happen, accepting that there is a spread around that. I am sure that the general public and Members of Parliament fully accept that this is not a precise science. This is a central view, and there is a big academic literature around this. Some people will die significantly earlier than they are predicted to; a small number will die very significantly later; and some people will certainly die a bit later or to some degree later. The central view is usually reasonably accurate—that someone is now on a pathway from which there is not going to be a return.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for coming to give evidence this morning, gentlemen. I would like to pick up on coercion and capacity, because they are two really important points in the Bill. I would like to know a little more about the work that doctors and nurses do to check for coercion and assess capacity when patients are making really important decisions and choices at the end of life, but maybe in other contexts as well. The Bill refers to the Mental Capacity Act. That Act is a big piece of legislation, but I am conscious that there is only a short reference to it in the Bill. Is there anything we could add to the Bill that would improve the robustness of the reference to mental capacity? What does it look like now, and is there anything we could add?

Professor Whitty: Duncan, why don’t you take the first bit and I will take the second?

Duncan Burton: In terms of looking for signs of coercion, all of our nursing and clinical staff have safeguarding training, which already looks at things like whether people are under financial coercion or other forms of abuse. That training is already in place and it is extensive across the NHS and social care. If the Bill is passed, we will need to look at how we strengthen that training in relation to spotting the potential signs of coercion in this space as well. Given that that mechanism is already in place, I think that would be an extension, so it is important that we factor that in. I am also mindful, given the scale of colleagues we have working across health and care, that the time between the Bill being passed and its implementation is sufficient that we enable everybody to receive that additional training, if it is required.

Professor Whitty: In terms of strengthening the Bill, as a practitioner, I was relieved that the decision was for the Bill—if it stays this way—to stick with the Mental Capacity Act, and that was for two reasons. First, that Act is used up and down the country by doctors and nurses every day; they know it and they understand it. Although, as you say, it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, “Does this person have capacity?”, in almost all cases you will get six or seven identical answers, because people are used to using it.

It additionally has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation. Within the legislation, it is very important that there are some situations where you will need to call for additional assistance. For example, if someone has a co-existing mental health condition, you will probably want to ask a psychiatrist additionally whether that condition is interfering with the decision taken to the point that someone loses capacity for this very important decision. The level of capacity has to be reasonably high.

My own view is that starting this way is the sensible thing to do. That does not mean there could not be arguments for some additional points, but I cannot immediately—again, as a jobbing doctor—see ones where I think, “This is going to make a big difference.” The fact is that this is founded on a very established bit of well-used and well-recognised legislation.

[Kim Leadbeater]

Q To that point, in those conversations where patients are making very serious decisions, it is not uncommon that you would seek additional advice from other professions, such as a psychiatrist or possibly a social worker and other professionals, if you felt there was a need to do so.

Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.

[Rebecca Paul (Reigate) (Con)]

Q The Bill sets out that it should be brought into force within two years. If the intention is to provide assisted dying through the NHS, can the NHS be ready in time to deliver the service equitably and safely? What needs to be deprioritised in order for it do to so?

Professor Whitty: As we have seen in covid, the NHS, like any service, can swing very fast if there is a need for speed. In this case, I think most people in society would say that the key thing is to get this right. Personally, I would rather it was not running against a timeline. You would not want it to drag on forever, because then you have uncertainty for everybody, but I think Duncan and I would both say that two years seems a reasonable starting point. With some things, it might take longer than that to work out how we are going to provide this in the most safe and equitable way—for example, in dealing with minority and other groups. We need to get all that right and, at least at first pass, get it as close to good as we possibly can.

Equally, we may find when we first start using the legislation that there are some things that we had not considered at the beginning, and therefore we need to go back and improve on them because we just had not thought about them in the first way through the gates; that is why I hope that some of the more operational issues are done through secondary legislation and regulation. Inevitably, that is true for many bits of legislation, but it is particularly important here.

I go back to my very first comment: the central person here is an average citizen in their last six months of life. What we do not want is a system very difficult for them to navigate so that they spend their entire last six months of life—if the Bill is passed and they choose to take account of it; they are going to be a minority—stuck in a bureaucratic thicket. We need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating usually makes the safeguard less certain.

--- Later in debate ---

[Sarah Olney]

Q Leading on from Dr Opher’s question about the “must refer” clause, you and Professor Whitty both stress the importance of the relationship between the doctor and the patient, yet there may be doctors who feel very strongly against mentioning assisted dying. Given the existence of clause 4(5) and the “must refer”, do you think there is a danger that there might be doctors who would be reluctant to provide a prognosis of six months or less if they thought that that would make the patient eligible for assisted dying, and that simply was not something they could support?

Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.

[Kim Leadbeater]

Q On the point about referral, what happens in the case of abortion? That is one of the closest parallels we can get. If we have a doctor who is not comfortable having that conversation, presumably they cannot just leave that person with nowhere to go.

Dr Green: What would happen is that the doctor would provide the patient—through their receptionist, through leaflets or through a telephone number—with somewhere they could get the information. You cannot just abandon a patient. They have to be sure that the patient has the ability to do what the patient wants to do.

[Kim Leadbeater]

Q Exactly, so although the terminology of “refer” might not be quite right, are we saying that we have got to provide that patient with a course of action?

Dr Green: Yes. It is the “referral” word that is problematic for us.

[Kim Leadbeater]

Q That is very helpful. Let me turn to when the GMC guidance on arrangements about assistance to die is raised with practitioners. Part of the guidance is that practitioners have to

“respect competent patients’ right to make decisions about their care, including their right to refuse treatment, even if this will lead to their death”.

I am interested in how that fits in with those very difficult conversations. When a patient executes that right to refuse treatment, are those cases logged? Are they monitored or reported on?

Mark Swindells: There was an important piece of case law—I think in the 1990s—that clarified that a patient refusing treatment and subsequently dying is not an act of suicide. You are right that our guidance talks about the importance of a doctor explaining to the patient about the likely course of action in terms of the option for no treatment. Again, that is intertwined with the Mental Capacity Act 2005, and puts a lot of autonomy in the space of the patient, along with the consent case law that we covered before.

On the previous point about referrals, our guidance is similar to what Dr Green was saying: in the case of conscientious objection—for example, on abortion—the important point is that, from the patient perspective, they are not left with nowhere to go. If that assists, that may be a principle that helps and reads across.

[Kim Leadbeater]

Q On the point about reporting, where patients take that right to refuse treatment, capacity must be assessed at that point if a patient has said, “Look, I don’t want any more treatment.” That is quite an important point to assess capacity. Are those cases logged and recorded?

Mark Swindells: Yes. It would be important for the patient’s records to cover the points of consent and that the doctor has recorded that they have interacted with the patient that way. I do not believe it is centrally held or collated in any sense like that, but I may be wrong.

[Jake Richards]

Q Dr Green, on subsections (4) and (5) of clause 4 and the information services, as opposed to the referral to a practitioner, I think your point has some weight. In terms of the rest of clause 4 as drafted, it has an opt-in, it gives wide discretion to practitioners and there is no obligation to raise it, so from my understanding of your written evidence, it ticks all the boxes. Is that fair?

Dr Green: Yes, with the exception of the referral.

--- Later in debate ---

[Jack Abbott]

Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process?

Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.

Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.

In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.

Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.

It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.

One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.

[Kim Leadbeater]

Q Thank you for coming and giving evidence today, and for meeting with me recently. You both represent organisations that have neutral positions on assisted dying. I am really interested in this multidisciplinary approach that you are talking about, and I think it is a really valuable conversation, so thank you for raising those points.

I want to ask a bit more about what this end-of-life conversation looks like in your experience, because you are absolutely right; of all the people who are spending time with patients in their last few months of life, it is often nurses and palliative care social workers. You have a really important role to play.

I am also interested in what this would look like in reality. There has been talk of a kind of separation of palliative care and assisted dying, but, actually, I think we should be looking to embrace a holistic approach to end-of-life conversations and end-of-life care, which is what has happened in other jurisdictions. You might have a patient who has signed up for assisted dying but never does it because they have good palliative care and they work with their palliative care experts and specialists. Therefore, I think it is important that we do not try to separate these things.

I would like your views on that, but I think that one of the strengths is that having these conversations about death, about dying and about end of life is a really positive thing. Your members have an important role to play in that, so could you talk a little bit about the holistic approach that your members take?

Professor Ranger: You are right regarding the conversations and the care around dying. Having those conversations with people around pain management and symptom management is particularly the role of palliative care nurses. With assisted dying, I think the conversation is sometimes slightly different. It is talking more as a nurse in some ways, because the primary reason that assisted dying is often a discussion is a lack of autonomy, not pain. Therefore, the conversation generally tends to go in a slightly different way.

Symptom control, and being scared of pain, is understandable, and we absolutely have the ability to get that right for people, but when it comes to seeking assisted dying, the primary reason is usually autonomy, rather than pain and fear of dying. Therefore, in a practical way, I think an experienced nurse or doctor will start to gauge the difference in those conversations, because they are different. I think it is about being really clear around those conversations and really listening to what people have to say, and then having a way to be able to ensure that what an individual wants is something that you have got, and that you listen to.

I absolutely agree with Glyn about safeguards and all the things that we absolutely need to make sure are there, but the whole point of assisted dying is not to be paternalistic, but to respect autonomy. Whatever safeguards we put in with that, we have to be really careful not to ignore that right of autonomy, which is primarily what this Bill is trying to preserve.

I think it is about being really vigilant and listening. A primary role of a nurse is not to advocate their personal view, but to really listen to somebody else and to ensure that what they want is pursued. In all that discussion, it is really important that that does not get lost.

[Kim Leadbeater]

Q That is incredibly helpful, thank you. You are absolutely right to bring it back to patient autonomy—patient choice—so that, while putting all the safeguards in place, we are very clear that it is their genuine choice based on what they really want to do. It sounds as though you are saying—

[The Chair]

Order. Is there a question there?

[Kim Leadbeater]

Yes. It sounds as though you are saying that your professionals are trained to have those conversations, which is very reassuring. Glyn, do you want to add anything?

Glyn Berry: Just to say that I absolutely agree with Professor Ranger. My experience of working with palliative nurses, and nurses in general, is long, and I have historically had exceptionally positive experiences and continue to do so. I think that we learn from each other, and it is really important that we can have those conversations with the person and ask questions that they might never have been asked before, such as, “What is it that you want?”

Professor Ranger is absolutely right in terms of autonomy and the person having control, because once that diagnosis is given, it can be a downward spiral for a person and they feel that they lose control. Patients and families talk about that—about having no control over what is happening. In effect, that is true in terms of what is happening in the disease or illness trajectory, but it is so important to remind a person that they are still the person that they were before that diagnosis, that they will continue to be that person, and that they still have a voice. In both our roles professionally, and alongside other clinicians, that is what we seek to do all the time. That is why a multidisciplinary team approach is so important.

Ultimately, we could find that, once you have asked all the appropriate questions and you have put potential safeguards in place following conversations, a person may not choose that particular point to end their life—as you mentioned, Kim—and may continue to live to the end of their natural life.

[Sojan Joseph]

Q When the RCN Scotland director gave evidence to the Scottish Parliament during the discussion of the Assisted Dying for Terminally Ill Adults (Scotland) Bill, he expressed the RCN’s concern that there were not sufficient safeguards in place to protect nurses and nursing practice around assisted dying in Scotland. Are you satisfied that the Bill we have before us in England and Wales addresses those concerns, or would you like to see amendments to ensure that the mental health and wellbeing of nurses involved in the process are protected, should the Bill become law?

Professor Ranger: Yes, we would want to see more support and protection for nurses. Of course, in the exploring of assisted dying legislation in Scotland, the second clinical decision maker is a nurse—so it a doctor and a nurse, whereas in England and Wales we are looking at two medically qualified practitioners. We absolutely want to make sure that the skills and support is there for nursing staff, and the ability—as I heard our medical colleagues saying—to not be involved in assisted dying absolutely has to be supported. It cannot be an expectation of the role; it has to be something you choose to proactively take part in as a conscious decision. It cannot ever be just an expectation of a nurse. We are absolutely adamant about that. The Bill cannot just support the needs of medical staff—nursing absolutely has to be included within that, both in skills and support.

Terminally Ill Adults (End of Life) Bill (Third sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Tom Gordon]

Q Since the assisted dying Bill had its Second Reading, we have seen announcements from the Government about investment into palliative care. Obviously that is mostly capital and we need to see more long-term funding. Do you feel we are already seeing increases as a result of this conversation? Is there any reason why that should not continue?

Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.

James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.

On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Goodness me, there is a lot to cover.

To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.

Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.

I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.

Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.

Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.

The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.

What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.

The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.

Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.

What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.

The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.

This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.

[Kim Leadbeater]

Can I ask a quick follow-up, Chair?

[The Chair]

We will come back to that once I get other Members in.

--- Later in debate ---

[The Chair]

One last question, very quickly.

[Kim Leadbeater]

Q I have a very quick one. You talked about inequality in healthcare and in systems. What I would like to come back to is the status quo. What are your comments on the inequality that exists currently, where assisted dying is available to people who have got the money to go to Switzerland, or another jurisdiction, and have an assisted death? I ask Dr Ahmedzai, first of all.

Dr Ahmedzai: Clearly, British people have had that option for many years, since Switzerland first offered that. It is clear that two things happen. One is that it selects people who are better off and more functionally capable—they can do it—so it discriminates against disabled people. Also, people tend to do it long before they need to, when they are still fit. That is because mostly, they want to go on their own, without dragging relatives along. It is doubly damaging to families who are going through an illness with somebody who is dying. They have to say goodbye to them long before they need to. However, that is because we do not offer that option here.

[Kim Leadbeater]

Does anybody else want to comment? Dr Cox?

Dr Cox: I am happy to. Of course we do not want people to have to make that choice. I will refer to everything I have said before: are they are making a real choice, and have they had access to really excellent palliative care?

I also make a brief point about the impact of the discussion around what dying looks like that the Bill has raised, and the fact that the stories that have been told have suggested to many members of the public that death is inevitably ugly, horrific and dramatic. Actually, that has made many people fearful, and they have been emailing me and saying, “I am now afraid of dying, and I wasn’t before.” They may then choose assisted dying before they need to because they have had a fear instilled in them that death is inevitably horrible and dramatic.

[Kim Leadbeater]

But those deaths do exist.

[The Chair]

Order. That brings us to the end of the time allotted to the Committee to ask questions. I thank our witnesses on behalf of the Committee for their evidence.

Examination of Witnesses

Sir Max Hill KC, Alex Ruck Keene KC and Sir Nicholas Mostyn gave evidence.

--- Later in debate ---

[The Chair]

We will now hear oral evidence from Dr Ryan Spielvogel, who is senior medical director for aid in dying services at Sutter Health, California, and Dr Jessica Kaan, who is medical director for End of Life Washington. Both witnesses will appear via Zoom. I call on Members to ask questions, but in view of the last point of order, I must be absolutely clear that I will interrupt if questions to the witnesses are too long. We do not have much time and people want to get their questions in—there has to be an element of self-discipline in that regard.

[Kim Leadbeater]

Q I will try to be brief. I thank the witnesses for joining us from wherever they are in the world—it is great to have you with us today. I will get straight to the point. There is understandably a significant amount of nervousness about the potential change that the Bill would create within England and Wales. Could you talk to us a little bit about what the process has been like in your jurisdictions and what it looks like now? What are your experiences, particularly focusing on questions around mental capacity and coercion? Dr Spielvogel can go first.

Dr Spielvogel: Thank you all for having me today. I am Ryan Spielvogel and I am senior medical director for assisted dying services for Sutter Health in California. I have been an assisted dying physician for the past eight and a half years, since the law went into effect here, so I have seen many terminally ill people going through the process.

You asked specifically about coercion and capacity. Determining mental capacity is something that we use physicians to do every day. There are codified steps and processes for us to be able to assess a person’s capacity. Capacity for anything, for any procedure or medical intervention, is presumed—that the patient has capacity—until they are deemed to not have capacity. We do that through asking questions, determining their understanding of their disease process, asking them to repeat what their understanding of their options is, and making a decision and then telling us their judgment as to why they came to that decision.

That is something that we do every day. It is oftentimes informal. For instance, if I am prescribing someone blood pressure medication, I might not go through the entire process of assessing capacity, but in longer or higher-stakes conversations like end-of-life discussions, I usually do ask somebody to repeat back to me what they understand of their disease process, their options, what their decisions are and why they are making those decisions. That is basically exactly what I do in these conversations.

In terms of coercion, I understand the concern. It is a very valid concern that people have. I have seen this in many jurisdictions in the US, where different states are considering legalising assisted dying, but I will tell you that in practice it just does not happen. I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion. People are just not that good as actors.

So we get the family out of the room. We dig deep into their concerns, their justifications and the reasoning behind their choices. It is often crystal clear, when you are speaking to someone who is suffering from a terminal illness. They are very focused on their symptoms, very focused on their quality of life, very focused on their suffering. I do not ever get the sense from them that their family, their doctors or anybody is coercing them into the decision. In fact, if anything, I have seen it many times the other way around. I tend to see it where the patient is really ready to let go, but the family is really not ready to let go, and the family puts up varying degrees of roadblock to the patient accessing assisted dying. I have seen many cases of people being coerced out of it; I have never seen someone being coerced into it.

[Kim Leadbeater]

Q That is incredibly helpful—thank you. Dr Kaan, do you want to add anything to that, and maybe touch on the training that takes place around identifying these things and the conversations that take place?

Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.

We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.

In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q My question is about how the legislation is going and how you have implemented it. What changes have you made since it began? What teething problems did you find as you were going along? What adjustments have you made to your process?

Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.

There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]

--- Later in debate ---

[The Chair]

Let us be clear. Witnesses can submit written evidence until the Committee reports to the House. It is open to Members to individually write to witnesses and invite them to give written evidence, if they so wish. My advice to the hon. Member is that if he wishes to look at this in a more formal way or through a more formal mechanism, he is to speak to the Committee Clerks, because it is beyond my remit.

We now come to motions (a) to (d) amending the sittings motion tabled by the Member in charge. I have selected the amendment tabled to motion (a) and will group all four motions and the amendment for debate. I will first call Kim Leadbeater to move motion (a), then Naz Shah to move the amendment. The scope of the debate is all four motions and the amendment.

[Kim Leadbeater]

I beg to move amendment (a), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert—

“Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”

These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters.

As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend.

We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts.

Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment.

I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.

[Naz Shah]

I beg to move an amendment to amendment (a), at end insert—

“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.

I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.

This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.

The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.

Standing Together Against Domestic Abuse has said that

“We must echo concerns raised by the VAWG sector”—

the violence against women and girls sector—

“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.

Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.

We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.

We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”

All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.

In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.

Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Kim Leadbeater Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them?

Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.

The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions?

Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.

That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.

I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

[Kim Leadbeater]

Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying?

Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.

Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.

It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.

We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

--- Later in debate ---

[The Chair]

I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.

[Kim Leadbeater]

I beg to move,

That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”.

Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.

Question put and agreed to.

Examination of Witnesses

Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.

--- Later in debate ---

[The Chair]

I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

Terminally Ill Adults (End of Life) Bill (Sixth sitting)

Kim Leadbeater Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q My question is to you, Mr Greenwich. I understand that in New South Wales—and please do correct me if I am wrong—similarly to the Bill we are proposing, you adopted legalised assisted dying for those who are terminally ill and will die within six months, but you also added an additional criterion, which was within 12 months for a neurodegenerative disease such as motor neurone disease. That element is not proposed in our Bill, but we have heard from other witnesses over previous days about that issue. What reflections might you have regarding that, and why did you add that element into the Bill beyond the six months that we are proposing here?

Alex Greenwich: Thank you very much for your question. At the outset, I will just stress that every jurisdiction should legislate the form of voluntary assisted dying that is appropriate to them. In New South Wales, that was six months for a terminal illness, or 12 months if that terminal illness was a neurodegenerative disorder. We had learned from the other schemes in Australia that that was going to be important because of the decline that occurs in neurodegenerative disorders like motor neurone disease, for example. It was because of that that we went down that path.

Professor Blake: I should add that in Queensland, there is no such distinction in life expectation between other diseases and neurodegenerative diseases. Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses. The Queensland Parliament took a different approach to address that particular feedback.

Dr Furst: From South Australia’s perspective, we are similar to New South Wales; we have less than six months for all conditions bar neurodegenerative conditions, which is less than 12 months. As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.

[Kim Leadbeater (Spen Valley) (Lab)]

Q Thank you to the witnesses for joining us this morning. I would like to address my comments to Alex Greenwich, if I may, but also come back to Dr Furst and Professor Blake.

It is really valuable for us as a Committee to hear your reflections on the experience of the process of passing this legislation. How did you manage to keep that process patient-centred but also take into account the concerns around the broader societal issues, particularly when it comes to equality and human rights—those really important issues? What was that process like, and what are your reflections on it? Also, Dr Furst and Professor Blake, one thing that I feel really strongly about is having really good training around assisted dying, and end-of-life care and choice. Would you like to make any comments on what that looks like?

Alex Greenwich: Thank you very much for that question. I will take you through a little bit of the journey to voluntary assisted dying in New South Wales, what encouraged action, and then the safeguards that we put in place.

The New South Wales coroner had reported to us that there were a number of really horrible suicides of people with terminal illnesses who felt they had no option—that those were cruel and lonely suicides. That was backed up by paramedics and police who would arrive on site. Myself and my parliamentary colleagues decided, “We can do better, and we can regulate in this space.” Voluntary assisted dying in New South Wales is an important form of suicide prevention. What voluntary assisted dying does, in the model that we legislated, is ensure that a person who has a terminal illness and knows that it is going to be a cruel and painful end of their life is instead directed to a doctor—a doctor who will be able to take them through all of their palliative care options, provide and link them with social supports, and give them the choice to have a death that is better than their illness would otherwise provide.

It has been important to make sure that our legislation is limited to that cohort of people who are terminally ill and know they will have a cruel end of life. Our legislation is not about people with anorexia nervosa. It is not about people with a disability. It is not about people who are feeling a burden. It is about a very limited and narrow cohort of people who know that they are going to have a very cruel and painful end of their life, and want that control to know that they can have a death that is better than what their illness would otherwise provide.

We have ensured that decision-making capacity needs to be enduring. We have ensured that a person cannot be under any form of coercion. We ensured that we had a really strong period of implementation, from the time the Bill was passed to 18 months later, when it came into effect, to make sure that our health system and the various doctors required training.

In New South Wales, the experience of voluntary assisted dying is that it has been a form of suicide prevention, and that it has also been, as I explained earlier, very pro-palliative care. As I reflect on our parliamentary debate, it was also one of the first times that our Parliament had grappled with the concept of death. We were very honest about it, and we were very honest in having to admit that we are all going to die, that there are some people with some terminal illnesses who are going to die in a really cruel and painful way, and that we could provide them with an option of control, peace and respect. We believe, and our annual reports into our legislation indicate, that we have been able to provide that. I am happy to answer any further questions, but I will wrap up on that.

Professor Blake: Given that the Western Australia legislation has been in force rather longer than the other jurisdictions that have been talked about today, we have had the opportunity to reflect upon it—I am speaking here as a lawyer; I assume that is why I have been invited to talk—and that has revealed some of the very good things about the working of the legislation, but also some of the challenges that have emerged.

As Dr Furst has said, the legislation in all Australian jurisdictions varies slightly, but it follows a particular legislative model, and is highly prescriptive. It requires a number of requests and, in Western Australia, assessment by two different practitioners. In Western Australia, there is no judicial double-checking of that process. Although I note that that is contemplated within the UK law, that is not something that we have found to be necessary or even appropriate in Western Australia, and I think that would be the case in other Australian jurisdictions.

One of the issues we have experienced is that there is a struggle to get people to take up the training, whether that be medical practitioners or nurse practitioners. One of the thoughts around that has been the very prescriptive nature of the model, which requires a lot of work on the part of the practitioners. It is worth bearing in mind when looking at your piece of legislation that the more prescriptive it is, the more work it requires on the part of practitioners, and that is a lot of work. We need those people to undergo the training in order that the process is done properly and all the safeguards that are included within the legislation—and they are extensive—are respected. That is something to bear in mind.

We have prescriptive provisions around capacity and voluntariness and lack of coercion. I would add that we also have a requirement around residency. If we are looking at when the legislation has come before a tribunal or judicial body, the only circumstance—in Western Australia, at least—where it has come before the tribunal, which is the State Administrative Tribunal, has been where the practitioner has regarded the patient as not eligible on the grounds of not fulfilling the residency requirements. There has been no other ground on which a matter has been taken to a judicial body.

You asked about the training. That is an essential requirement for practitioners who are involved in making assessments and in the whole process. It is intrinsic to the operation of the Act. The feedback I have heard is aligned with what Dr Furst has said—that no divisions have arisen within the practitioners here, and that those who have chosen to do the training are indeed very valued and very much appreciated by the people who have accessed the scheme.

I will say two more things about the regulation. One is that in the report that has been handed down, the only negative feedback has been about delays. That has been identified as being due to a lack of education among health professionals. One of the recommendations of the report is that education really needs to increase so that people’s journey on VAD is not unnecessarily delayed and, perhaps, their wishes are not able to be granted.

The second thing is on conscientious objectors: 13.7% of applications for VAD in Western Australia from 2023 to 2024 were declined on the basis of conscientious objection. But in Western Australia, unlike some other Australian jurisdictions, if a practitioner declines to become involved in the process, they are required by law to give the patient an information sheet outlining options around voluntary assisted dying. That is actually mandated in the legislation.

I have probably said enough for now, so I will hand over to Chloe.

Dr Furst: I completely agree with Meredith that the training is fundamental. For most jurisdictions, it probably takes a full day. It is often an in-person event followed by an exam, which you have to pass. In South Australia, we had a whole lot of mandatory questions that you actually had to pass to be eligible, to make sure that you were upholding the legislation.

This is so different from anything else in medicine. In any other part of medicine that I practise, if I see a process that I think can be improved—if I see efficiencies that can be made or bits of the system that are not adding to patient care—I can choose to adapt the process as I see fit to give the patient the care that I want to give or that is compatible with what the patient wishes. That is so different from voluntary assisted dying, where, as Meredith said, it is so legislated, down to who can be a witness for various documents. As a doctor, the amount of documentation that is required for voluntary assisted dying is second to nothing. We just do not do that kind of documentation in any other areas of medicine. So it is quite different, and it really does require being quite precise around that documentation and making sure that you are meeting all the timeframes and guidelines. The training is hugely important in terms of the operational component.

There is also the training around end of life and conversations, and how you support the patient and the families. That is a lot harder to teach. That is, I guess, why people will fall into this, and why a large number of palliative care doctors will do it—because it is already second nature to them or they already have the relationship with the patient and they see these conversations as something they are good at and good at facilitating.

So there are two parts of that training that are really important, and then, as Meredith said, there is also the training we need to be giving to the rest of our workforce, and really all health practitioners. A patient might ask the social worker, the orderly or the dietician about assisted dying, and they have to know how they can respond and how they can connect that individual to the right practitioner. That is really important. We have done a lot of work in South Australia, as all the other jurisdictions have, around upskilling the whole workforce, because this is everyone’s role and job.

I also wanted to speak briefly on what we in South Australia call the gag clause. In South Australia and Victoria, we are not allowed to bring up voluntary assisted dying with patients, and that is really, really problematic. From my perspective, it leads to poor provision of care. In medicine, when I am talking to a patient, in every other area, if they needed treatment, I would be obliged, and it would be good practice, to tell them about all the treatment options that are available to them. If someone had cancer, I would want to be telling them about good palliative care, potentially surgery, and radiotherapy and chemotherapy, yet voluntary assisted dying is the one thing we are not allowed to talk about and is taken off the menu. Some people may not know that voluntary assisted dying is available to them. They might be waiting for me as the doctor to bring it up to them. I have brought up every other option for them; why am I not able to talk about voluntary assisted dying? I just think it is really important that we do not stigmatise voluntary assisted dying and that we see it as a valid option for people.

Professor Blake: To add to what Chloe said, in Western Australia practitioners can raise voluntary assisted dying as long as it is in association with other end-of-life choices, but the way the legislation is worded is confusing, so one of the recommendations in the most recent report is that that be removed altogether so that voluntary assisted dying is treated like any other treatment option. As Chloe indicated, the evidence was that treating voluntary assisted dying differently can compromise the whole end-of-life journey, because it interferes with discussion of other end-of-life options. The strong recommendation from the board is that it be removed altogether and that voluntary assisted dying be treated just like any other appropriate treatment option so that the patient has a true choice.

Terminally Ill Adults (End of Life) Bill (Seventh sitting)

Kim Leadbeater Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Opher]

It was clause 26, sorry.

Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.

There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.

The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.

The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.

Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.

On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.

[Kim Leadbeater (Spen Valley) (Lab)]

Q For clarity, Dr Ward, you are right that clause 34 requests that the chief medical officer submits an annual report. You clearly have many years of experience in this subject. For you, what does best practice look like when it comes to assisted dying, end of life choice and end of life care? That is what we are all aiming for in our deliberations. How do we keep it patient-centred?

I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?

Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.

I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.

You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q Dr Ward, I think the point about a holistic and evidence-based approach is critical. In the work that you did in the Scottish example you gave, how was the terminal illness definition arrived at? How are you capturing those people who are vulnerable and want to have an assisted death, but might end up limited in their scope and ability to access it?

Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.

I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.

--- Later in debate ---

[Danny Kruger]

Q It is great to hear about the case for common law over the Human Rights Act. Yesterday we heard about parliamentary sovereignty. This is a tremendous process we are having here.

Professor Hoyano said that the person in the street would not see the difference between a patient requesting to die by the withdrawal of treatment versus the active administration of fatal drugs, whereas I think you said, Professor Owen, that you did see a profound difference between that decision on the part of the patient and also, presumably, the act on the part of the medical professional, in the case of either the withdrawal of treatment or the administration of fatal medication. You said that you would be happy to draw that out; could you do so?

Professor Owen: Yes. I am happy to try now, but also to do it further with some written submissions if that would be helpful, because it is such an important point. First, for the man on the street, or the person on the bus, one thing to remember—this comes out in the public opinion polling—is that when you ask about assisted dying, some people think that that is access to palliative care. There is a degree of misconceptions that are out there in the public that are important to bear in mind.

On the distinction between the decision around the refusal of life-sustaining treatment and the decision regarding assisted dying, what are the similarities? Well, they are both about life and death. What are the differences? One is a refusal; one is a request. One is traditionally considered to be about bodily integrity—it is the so-called shield of the person, or the patient, against the intervention on the body that is being made by the medical profession. You are giving the patient an important right, which is a shield-like right. That contrasts with a request for assisted dying, which is a request. You are involving other people in an act that is an act of ending one’s life. That is not something that the medical profession has been comfortable with, going back thousands of years.

So you can discern a number of differences. Could you reduce those differences to one thing and one thing only, and be particularly precise about it? Probably not. I think you are talking about differences that cluster and group, and which we overall accept as a difference of kind.

The other issue here that is important is intention. When you are assessing somebody’s decision to refuse a life-sustaining treatment, the doctor there does not have the intention to end a person’s life. That would be a concerning intention were it there—and sometimes it is looked for, actually, if it is disputed. But of course, when a doctor is involved with a process where somebody is seeking assistance in the ending of their life, it is quite difficult to say that the doctor does not have an intention to end life.

One could go on with a discussion of the differences, but the similarity is that we are talking about life and death.

[Kim Leadbeater]

Q This has been an incredibly helpful panel, so thank you for all your expertise.

Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that.

Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it?

When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be.

There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please.

Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.

[Lewis Atkinson]

Q Professor Owen, can I probe a little more something that you raised before—the interaction of potential impairment, potential family dynamics and so on in a way that is not malign, but that you think is a consideration? We have heard some evidence in the course of this week about whether there would be any benefit from a more multidisciplinary approach that could make a more rounded, psychosocial assessment of someone’s situation. That would be less about the clear test of whether there is capacity under the Mental Capacity Act and more about the wider considerations of those interactions. I just wonder whether the inclusion of, say, social workers or mental health professionals as part of a multidisciplinary approach would give you any reassurance on those points that you made.

Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.

Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.

--- Later in debate ---

[Dr Opher]

Certainly.

[Kim Leadbeater]

Q We have heard a lot from witnesses this week about safeguarding. That is something I am keen to pursue. The Bill has a significant number of safeguards already, but is there anything else that you think we could add? I think all on the Bill Committee are interested in hearing such ideas. In particular, we are thinking about how we can protect people, such as people from disadvantaged backgrounds, older people—Dr Richards, I think you have experience of working with older people—people from a range of different backgrounds, and people with disabilities, so that we keep the Bill very much focused on the people it is designed to help, who are terminally ill people with less than six months to live, while addressing more of the broader concerns about some of the inequalities in society.

Dr Richards: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.

One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.

[Kim Leadbeater]

That is really helpful.

Dr Richards: I do not think there is any evidence that there is a loss of trust in doctors post legalisation—I just wanted to add that.

As I said in response to the earlier question, this is a categorically new thing that would be coming into society, which would cause cultural change in how we approach, think about and anticipate dying. It is a big deal—I know you all know that. Accompanying it, therefore, there needs to be really sensitive information delivery that is appropriate across society and that will alert people to this. In particular, if you are going to have a system where doctors are not allowed to raise it with patients, people need to know about it. That is one thing.

Reducing people’s fears is also important. I mean, there are so many misconceptions about assisted dying, even among people who have spent quite a lot of time reading about it and researching it. It is a very simple thing, but the discourse in society has been going on for so long that there is a lot of misunderstanding.

[Kim Leadbeater]

Q Can you give an example? What do you mean by that?

Dr Richards: Misunderstandings of what it is? Fundamentally, that it is not based on the principle of autonomy and that it is something that can be done to you, without your consent. You would not want the general public to think that. At a very basic level, it is understanding that assisted dying—the very phenomenon that that term encapsulates—is a phenomenon that starts with the patient. It is a request made by the patient because of their subjective assessment of their quality of life as they are dying. At a very fundamental level, you would want to communicate that to the public. It is a huge piece of work to have to create an informational context that is variegated according to the starting position of people’s knowledge base around it, and to bring in something that does not scare the public and so they see it as something that can be positive.

In jurisdictions that have legalised, even post-legalisation there continue to be elements that resist it. However, you start to see positive stories of the kind of ceremonial aspects that can come when you can time death. There is a whole cultural piece around new rites—new rites around dying that are being created when people choose to have an assisted death, and the new dying time or space that is opened up there, as well as the intentional actions that can happen from people’s social groups. Post-legalisation, it is not just fear—I think you get a balance of stories coming through—but it is something that you need to attend to.

--- Later in debate ---

[The Chair]

Thank you.

[Kim Leadbeater]

Q I have a very quick question. Professor Preston, you talked about nurses. Again, feeding into this multidisciplinary approach, one thing I am really clear about is that we must have the best training in the world around those end-of-life conversations and end-of-life choice. Do you have any thoughts about what that training could look like or what the important components of that would be? I am interested to know.

Professor Preston: We have heard lots of evidence about training schemes around the world. To be honest, I think they are still developing, but we can look at the good elements of those and at what has and has not been evaluated. We can do it almost like action research, where you are learning as you go, and we can improve the training as we go.

Most people do not die under palliative care. This Bill will affect general care; it will affect specialist care, but not in palliative care. We need to train those people as well, because they will be having a lot of these conversations. We are doing that training now, which is about how we talk to someone in a compassionate way. How do you help people to understand that they can be involved in the decision making? What might the goals of care for you be, and what might a goals-of-care conversation look like?

We have lots of this training already. Palliative care has huge expertise in this with advanced care planning and the rest of it, so it is about getting some of that incorporated. It is not just about saying, “This is what an assisted death would look like. This is how it would process.” It must be more than that, and we need to help people to explore their end-of-life choices. How do you want to die? Do you want to die at home? Do you want the cat on the bed? It is about all those things that are really important to people, but we must have that conversation and explore them, and it is quite hard to get clinicians to have those conversations. There will be a special group of people who can manage this; they will need training and support.

[The Chair]

I thank the witnesses on behalf of the Committee. We will suspend until 3 pm, which gives us six minutes.

--- Later in debate ---

[Dr Opher]

And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?

Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”

He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”

[Kim Leadbeater]

Q Thank you to the three of you for coming here this afternoon and telling your stories. I know how hard it is to tell your story over and over again. I think it is important to reflect on the fact that we have had a lot of talk this week about amendments, clauses and various other technical details, but this is the reality of the subject. Thank you so much for sharing your stories.

Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here?

I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people.

Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”.

Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while.

The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.

[Kim Leadbeater]

Thank you so much.

Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.

We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.

When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.

Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.

I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”

The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.

Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.

In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.

The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.

[Sarah Olney (Richmond Park) (LD)]

Q Thank you all for coming today and for sharing these really personal recollections. I have one question, but to both Liz and Julie, if that is okay. According to the notes that I have here—apologies if I have got this wrong—in both your brother’s situation and your husband’s situation, it was administered by the doctor. The Bill proposes that the person who has made the choice about ending their life should self-administer a solution. I am really sorry if this causes you any distress, but, on reflection, do you think that a self-administration regime would have made a difference?

Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.

Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.

--- Later in debate ---

[Kit Malthouse]

Q Julie, you said that you got to a point where Guy said to you that he had made his mind up. Had he made his mind up after conversations with doctors about what his options were?

Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.

[Kim Leadbeater]

Q I wonder if you have been on your own journeys around your personal views on assisted dying and choice at the end of life. I have spoken to lots and lots of people about this, and anybody who has had experiences similar to yours are very clear that the law needs to change. People who have not been as close to this issue as you have often hold a different view.

Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?

Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.

Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.

I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.

[The Chair]

May I offer all three of you the collective condolences of everybody on the Committee? I thank you for your bravery in attending today and for speaking to us. Thank you very much.

--- Later in debate ---

[Kim Leadbeater]

Q I take that on board fully, so thank you for those helpful comments. In terms of capacity assessment, point 12 in the feedback and the written evidence from the Royal College of Psychiatrists mentions having multiple opportunities to assess capacity. To provide reassurance on that, those are in the Bill—I think there are four or five opportunities to assess capacity.

My question relates to point 15 in your written evidence, around the Human Tissue Authority. This is a model I looked at in terms of the decision making on coercion and capacity around people involved in organ donation. Can you tell me a little about that, and whether you think that there are parallels? It is a very serious decision, so we are in that territory. This is about what that looks like and what the role of psychiatrists is. We have talked a little about this already, but if we were to take this multidisciplinary approach, which I think is really powerful, what should the role of psychiatrists be?

Dr Price: On the role of an oversight group, one of the risks with individual practitioners doing these sorts of assessments is that they may do it once or twice in their career. What we know is likely to happen is that a smaller number of practitioners will do lots of assessments and build up individual expertise. However, it might be that a particular practitioner does this only for a patient who they know, or only a few times. Therefore, in terms of building up through repetition the sort of expertise that somebody such as me might have in the mental healthcare of an older person—thousands of patients over a couple of decades—an external group that understands the standards and the process should be able to scrutinise things at the time.

There are a number of bodies that do that not just for organ donation, but across lots of different services. We have them for liaison psychiatry, and they might have them for electroconvulsive therapy services, for example. They are not extraordinary or unusual, but they ensure that there is some consistency and reliability and that the assessments are of a standard. Scrutinising assessments after somebody has completed the process is useful for everybody who comes afterwards; it may not ensure that the quality was there for that individual. That would be the rationale for that sort of approach. Forgive me, but would you ask me the second part of your question again?

[Kim Leadbeater]

Q I think you have answered it, but it was whether there was any specific detail about the Human Tissue Authority, how it operates and what that looks like.

Dr Price: I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.

[Dr Shastri-Hurst]

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.

In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.

--- Later in debate ---

[Kim Leadbeater]

Q I will stay in the same territory, if I can. The Bill includes, very clearly, an opt-in model for doctors. I took that from the BMA, which was very clear on that, and I think it is very important. My slight concern, on which I would like you to expand, is about the removal of assisted dying from the holistic approach to end-of-life care and conversations that GPs have all the time—as do other healthcare professionals, including nurses, as we have heard this week. Where this works well in other jurisdictions is where it is integrated and where we talk about palliative care, we talk about decision making and we talk about choices. I would appreciate your thoughts on that concern.

On capacity, just to reflect on the previous panel, my view is that psychiatric assessment would not be necessary in every case. We have heard from three families this afternoon; we can probably all agree that there was a clear wish from those individuals that this was the choice they wanted to make. I agree with the colleague who said that there will be a percentage of people; that is why I think referral to a psychiatrist is important in those cases. Have you any more thoughts on that, Dr Mulholland?

Dr Mulholland: As GPs, yes, holistic care is what we do—whole-person, biopsychosocial care. If we got into an end-of-life discussion with a patient and they expressed a wish to go through a route of assisted dying, should that be legal, that might still be part of a discussion that we would have with them. It is the active part of the process. The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.

We would not want to be out of the patient’s life. It is very difficult to be out of a patient’s life, but it may be that we are not part of that particular aspect of their care. It is the same when we refer to surgeons and hospitals; they have an episode of care elsewhere. This would be another episode that someone might be undertaking for that person. We will still have the families that we are part of; we will still be caring for them as well. We do not see them leaving general practice or general practitioners, but the assisted dying part of their health journey, or death journey, would perhaps be outside some people’s experience or expertise. You would need experts and people trained in it to be doing it, and not necessarily every GP.

Dr Price: No matter what somebody’s reason is for entering the process or what the outcome is, we are very clear that anybody should be able to access really good evidence-based care so that this should not in any way derail, deflect or make people not think about really good care. People should get really thorough assessments, have the right professionals involved in their care and have treatment where they need it and would benefit from it. All the quality that we have and all the guidelines that we work to should still be adhered to. We should still be providing all of the other good-quality care that we can. It is important not to bypass that and not to take shortcuts because they have made that decision.

[The Chair]

There are three people left who want to ask questions, so can I beg for brevity?